AB0966 Are Current Patient Reported Outcomes Tools Optimized to Capture the Entire Patient Experience?
Authors: P. J. Mease, V. Strand, D. Furst, E. Siegel, M. Mcilraith, M. E. Husni, M. C. Hay
Journal: Annals of the Rheumatic Diseases (2022)

Background Psoriatic Arthritis (PsA) affects multiple attributes of patient health; to assess treatment effectiveness a compilation of Patient Reported Outcomes (PRO) have been utilized. While useful, most of these were originally created for other diseases and only later validated or adapted for use in PsA. More recent efforts have focused on development of PsA specific PRO tools, with inclusion of patient input and relevance for use in both clinical research and clinical care (1). Objectives To subject a broad set of currently used PROs to patient assessment, giving insight into usefulness in the clinic and informing efforts for optimization of PsA PROs. Methods Four focus groups were conducted across three regionally-diverse areas in the United States from March 2016 to October 2016. Patients represented a range of disease history, symptoms, and severity. After trained facilitators encouraged open conversation about PsA, including symptoms, challenges and feelings about disease and treatment, patients reviewed 13 currently utilized PROs and rated relevance of these instruments to reporting their disease experiences on a 3 point scale of Relevant, Somewhat Relevant, and Irrelevant. Verbal discussion followed on the merits and challenges of each rated PRO Results PRO instruments ranged from overall global assessments to disease specific assessments (Table 1). The PROs received a variety of ratings, with Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) and Psoriatic Arthritis Impact of Disease (PsAID) judged as Very Relevant by the largest number of patients, followed by Health Assessment Questionnaire-Spondyloarthropathies (HAQ-S) and Pain VAS (Figure 1). Instruments receiving the most assessments of Not Really Relevant were Pt Global and PsA Quality of Life (PsAQOL). In the qualitative portion of the research, major patient critiques across PROs were the time frames listed on the questionnaires; some were too restrictive and disallowed reporting important recent disease activity. Preferences were for questions asked as ‘..since your last visit..’. Multiple participants also agreed that a visual tool allowing patients to circle specific joints to indicate pain would be useful. Table 1. Outcomes Instruments Assessed in the Study Tool Abbreviation Time Period Queried Patient Global Pt GA None Specified Pain Visual Analog Scale Pain VAS In the past week Health Assessment Questionnaire-Spondyloarthropathies HAQ-S Over the past week Short Form - 36 SF-36 Different periods queried for different questions: Compared to a year ago; None Specified; Over the past 4 weeks Functional Assessment of Chronic Illness Therapy - Fatigue FACIT-F Past 7 Days EQ-5D and EQ Visual Analog Scale EQ-5D-5L Today Psoriatic Arthritis Quality of Life PsAQOL None specified Psoriatic Arthritis Impact of Disease PsAID During the last week Dermatology Life Quality Index DLQI Over the last Week Psoriasis Symptom Inventory PSI Last 7 days Work Productivity and Activity Impairment: General Health WPAI:GH During the past 7 days Work Productivity Survey - PsA WPS-PsA Last month Beck Depression Inventory BDI-II During the past 2 weeks Conclusion Currently utilized PROs in PsA evaluating domains of fatigue, function, pain, and disease specific manifestations were all important regarding new therapeutic agents. However, some are more relevant than others to patients, most notably FACIT-F and PsAID, the latter being an important example of a patient-led and disease-specific development effort. Allowing reporting of items of concern without restrictive time periods is important to patients. These preferences and comments can be utilized to better understand the value of PROs in clinical settings to optimize patient-clinician communications. References [1]Gossec L, de Wit M, Kiltz U, et al. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. Ann Rheum Dis 2014;73: 1012–9. Disclosure of Interests Philip J Mease Speakers bureau: AbbVie, Eli Lilly, Genentech, Janssen, Pfizer, Amgen, Novartis, UCB, Consultant of: AbbVie, Eli Lilly, Boehringer Ingelheim, Pfizer, Amgen, GAlapagos, Genentech, Janssen, Sun Pharma, BMS, Celgene, Novartis, UCB, GSK, Grant/research support from: AbbVie, Eli Lilly, Genentech, Janssen, Pfizer, Amgen, Galapagos, Novartis, Sun Pharma, BMS, Vibeke Strand Consultant of: Abbvie, Amgen Corporation, Arena, Aria, AstraZeneca, Bayer, Bioventus, BMS, Boehringer Ingelheim, Celltrion, Chemocentryx, Elsa, EMD Serono, Endo, Equilium, Flexion, Galapagos, Genentech / Roche, Gilead, GSK, Horizon, Ichnos, Inmedix, Janssen, Kiniksa, Kypha, Lilly, Merck, MiMedx, Novartis, Pfizer, Regeneron, Rheos, R-Pharma, Samsung, Sandoz, Sanofi, Scipher, Servier, Setpoint, Sorrento, Spherix, Sun Pharma, Swing, UCB, Daniel Furst Speakers bureau: Corbus, GSK, Sanofi, Consultant of: Actelion, Amgen, BMS, Corbus, Galapagos, Sanofi, Novartis, Pfizer, Grant/research support from: Actelion, Amgen, BMS, Galapagos, Sanofi, Roche/Genentech, Novartis, Pfizer, Evan Siegel Speakers bureau: AbbVie, Janssen, Eli Lilly, Novartis, UCB, Consultant of: BMS, AbbVie, Janssen, Eli Lilly, Novartis, UCB, Melissa Mcilraith Employee of: Past Employee of Abbott and Celgene, M Elaine Husni Consultant of: AbbVie, Amgen, Janssen, Novartis, Eli Lilly, UCB, Regeneron, M. Cameron Hay Grant/research support from: Novartis